CELIAC Welcome Message

The CELIAC (Gluten & Wheat Intolerance) mailing List an open, unmoderated discussion list for those interested in celiac (coeliac) disease, sprue, dermatitis herpetiformis, gluten intolerance, wheat allergy, and coincident Intolerances, such as casein or lactose intolerance. The discussions include the latest scientific research (written for the layperson); information on what food is gluten free and what is not; tips on how to eat out of the house; strategies for coping with the various aspects of celiac disease, including the developmental delays and behavioral changes sometimes brought on or aggravated by gluten (Autism, Asperger's, Attention Deficit, etc.); recipes and tips on how to cook; and where to find gluten free food by mail-order. This international List acts both as a support group and an information exchange forum.

  • Listowner Recommendations
  • Important
  • Rules
  • AOL Subscribers
  • Specialized Celiac Lists
  • CELIAC List Addresses
  • Obtaining a previous messages
  • RSS feeds of messages
    | Feedback to the Listowners,  | Disclaimer,  |Copyright © | Updated 5 Feb 06 |
    | Return to the Basic Information page. | Return to the FAQ. | Return to the Celiac WWW page. |
    |Search the logfiles.|

    A. Listowner Recommendations:

    For those very serious about learning about Celiac Disease, or who want to get a comprehensive view of what is available from the CELIAC list, here are our recommendations, in order of importance:

    1. Read the CELIAC FAQ.

    2. Read the description of available files (FILEDESC).

    Reference files from this List are available at our WEB site for ease of obtaining selected information. The address is:

    3. Review some or all of the logfiles of previous postings. Explained in section I. It is particularly useful to review the more recent postings, going back a month or so. This will bring you up-to-date on current discussions.

    Interactive searches of the logfiles can also be performed. The address is:

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    B. Important:

    1. As a member of this List you find a considerable difference of opinion of what is and what is not Gluten-Free. There have been limited research on what are the toxic proteins. The reference file "GRAINS" is a good starting point for obtaining an understanding of terms.

    You will observe that there are some major differences on toxicity based on International borders. Some of the "grains" may be toxic based upon differences in local growing or manufacturing conditions.

    A major example of this is wheat starch and its use in Europe. Each person must review available information and make a personal choice. Personal attacks on supporters of these "grains" is not allowed on this List.

    2. In the spirit of information sharing and open exchange, this list is unmoderated and any subscriber can post to it. Therefore you should realize that information obtained from this list might not be accurate or medically appropriate for everyone. Each reader must draw their own conclusions about how to use any information obtained from this list. The listowners strongly suggest that each reader do their own analysis of any claims made and remember that this group cannot replace the patient-physician relationship.

    3. The list owners strongly recommend that you read the "Frequently Asked Questions (FAQ)" file. This file contains answers for many of the questions that new subscribers often have. It contains a lot of good information, and has been reviewed by medical professionals that also subscribe to this list. A copy is automatically sent to each subscriber a few days after their subscription is processed.

    4. For a detailed understanding of the Gluten Free lifestyle, a selection of fact sheets is available by request. These files were explained in the file (FILEDESC) that was automatically sent to you.

    5. Commercial products may vary in ingredients by country or place of purchase. The labeling laws for packaged food differ by country (for example, in England, starch can include wheat starch but in the USA starch in foods must be corn starch). Therefore, local laws that define labeling should be understood before any brand name or imported item is consumed. The poster's e-mail address can often provide help in determining the country of origin.

    6. Products and labels routinely change and all suggestions about a product's applicability should be considered extremely time sensitive.

    7. The decision to go on a Gluten Free diet should not be taken lightly and it is recommended that you first consult with your physician. Ironically, the diagnosis of Celiac Disease is only possible for a person that is currently consuming some of the toxic grains (wheat, rye, oats, and barley), so if you start a GF diet prior to a definitive diagnosis, it will greatly complicate the analysis. The fact that many celiacs have varying symptoms and reaction times, makes it impossible to obtain a confirmed diagnosis without special medical tests. For more information, see the FAQ.

    8. This LISTSERV(R) is International in scope and encourages the submission to the Listowners directly via private email of celiac related material for inclusion in our reference files.

    9. When *you* post a message to the List, you breech your privacy because everyone can read your return address. Because the mailing list is open to anyone, the archives can be searched by anyone (even non-members). Archive searches can reveal all the names and e-mail addresses of all the people who *ever* posted a message to the List.

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    C. Rules

    1. The Listowners expect that people posting to this list treat each other with respect and dignity. E-mail often exaggerates feelings, as there is no moderating information from tone of voice or body language. Anyone flaming others, using expletives, or posting in any way which the listowners, in their sole discretion, feel is not in the best interests of the list will be prevented from posting, if necessary without prior warning. Being flamed by someone else, whether in public or in private e-mail, is NOT an excuse for posting your own flame --- instead send a private e-mail to the listowners with a copy of the offending e-mail, and we will take care of it.

    All posts must conform to our stated objectives of Celiac Disease (Coeliac Sprue), dermatitis herpetiformis, gluten intolerance, and wheat allergy. The Listowners reserve the right to limit discussion as appropriate to conform with our stated goals.

    2. This list is not a free forum for company/organization ads or other forms of self-promotion. The interpretation of this "rule" is not an easy matter in the celiac field, where so much of what we discuss is by necessity oriented around commercial brand names or the many excellent support organizations. The important distinction is to AVOID SELF-PROMOTION of products or services. If an unaffiliated list subscriber wants to write "Company X has an excellent GF muffin", that is perfectly OK....that is just the type of information this list is set up to distribute. But employees of companies should not openly promote their own products, and support group leaders should not openly promote any of their group's products or services that have a cost associated with them.

    In May 1999, the Listowners instituted a new policy regarding self- promotion on the list. Therefore we've decided to allow clearly-marked ads on the List, one day per month.

    3. Because of the volume of our e-mail, this List requests that all replies be sent to the poster for summarization. These summaries are than returned to the List as a sinlgle post instead of multiple posts.

    If you believe your reply would correct a major mistake that impacts our health, then you should send it to the list for all the subscribers to see.

    Include only relevant lines from messages you are quoting. Including a complete message wastes resources and readers' time. The ability to selectively quote from a previous message with the addition of your comments is available in most e-mail readers. Some mail readers append the complete text of a previous email after your reply, please configure your reader to stop this option.

    4. If you post a question to the list, and get a number of replies sent back to you privately, give some thought to how helpful other list subscribers might find them. If you believe others would benefit from the private replies, we ask that you summarize them and post the summary back to the list. The summary can take many forms, so long as you trim out the unnecessary and redundant details from each individual reply. Here are some of the forms a summary to the list can take:

    5. E-Mail style.

    All posts to the List must be in plain text format. If you are using a mail program that allows fancy formating, ie: colors, underlining, etc you must disable these features. Each mail program is different in how to change this option.

    Caps are used to denote shouting, please avoid caps in messages.

    Attachments are not allowed as part of messages.

    The best line length or width for messages is 72 columns. Many WWW Browsers produce lines that are 110 columns. This creates hard to read messages due to the wrap around effect.

    When posting to the LISTSERVE(R), everyone is requested to keep their signature block to a minimum size. The standard is three lines or less. For those that are posting from work, please change your address to not include phone numbers and complete mailing addresses.

    Any time that a product and it ingredients are discussed, your location must be included in the message or signature block. This allows everyone to evaluate the availability of a product in their location and to evaluate it in the terms of each country's GF guidelines.

    The forwarding of posts to the List is discourage because of problems associated with including header information from initial message.

    When sending replies to another listmember, please take the time to quote the previous message instead of returning their complete post with your comments.

    Everyone is requested to keep their signature block to a minimum size. Also, it is helpful to include your e-mail address and location in your signature. This allows everyone to evaluate the availability of a product in their location and to evaluate it in the terms of each country's GF guidelines.

    Try to give your posts meaningful "Subject" lines. Do not hesitate to change the subject of a message you are replying to if appropriate. The subject line of an article is there to enable a person with a limited amount of time to decide whether or not to read your posting. The use of a comprehensive subject line and a database search is helpful to new subscribers in understanding previous discussions and selecting areas of special interest.

    Never repost a message to the List. There are many reasons why you may not see a copy. Before resending a post, ask the Listowners for guidance.

    Away from the office messages are not appreciated by posters to the List. When forwarding your office mail, please change your mail settings to nomail for the duration of your trip.

    Additional information on efective use of e-mail on a list is available from the reference file NETIQUETTE

    6. Copyright and posted material. All printed material that is not your original work may have a valid copyright. Therefore, its use on this List is not allowed without the owners permission. Just because a recipe of newspaper article is posted on another List in error, does not change the rules on how copyrighted material is handled.

    Abstracts or references to where the information on the Internet are appropiate means of getting this information to our listmembers.

    Handling of copyrighted material is an ever changing subject. Since this is beyond the scope of this List, the above guidelines are general in nature and not intended as a legal process.

    7. If your e-mail address changes, please do not send a message to the list announcing that fact. Instead, send a private note to those you correspond with personally; since none of the other subscribers will need to know about the change. The next time you post to the list you can indicate in your signature to the post that your e-mail address has changed, and any replies to the post will automatically go to the new e-mail address.

    8. All messages are saved in archive files and can later be retrieved by keywords.

    9. One of the main benefits of this list is that celiacs can share their knowledge on maintaining GF diets. On the other hand, spreading information which is not well-founded can cause confusion and distress amongst our members. Therefore, before making such a post, please be sure that you document your sources! Don't make a claim that an item is, or is not, gluten free until you can back it up. When you do post it for the group to read, please include the reasons, including the phone number/address, the date you received the information, and if possible the name of the person you contacted.

    10. If you are personally criticized, upset with the operation of the LISTERVE(R), or have recommendations for improvement, please do not respond directly on the list but instead privately bring it to the attention of one of the listowners listed below. The Listowners will collectively determine a proper response.

    Do not contact the Postmaster, or anyone else at ICORS with questions or complaints about our list.

    11. Volunteers are always needed in the operation of this List or in local groups, so if you have the interest, please contact the Listowners. We find our work very rewarding and educational!

    12. Requests for local area information (restaurants, medical professionals, health food stores, etc.) should only be posted to the List as a last resort. The Listowners request that you attempt to contact a local celiac support group or to contact a poster who was kind enough to include their location in their signature block. Information on local support groups is available at our WEB site. Click on the desired area to obtain a sub list of groups.

      Celiac Support Groups in the United States
      Celiac Support Groups in Australia
      Celiac Support Groups in Canada
      Celiac Support Groups in Finland
      Celiac Support Groups in Italy
      Celiac Support Groups in other countries

    Another way of finding people in a given location is by doing a database search on the archives for the desired city. You can then directly contact the people this database search turns up.

    13. Most posts to the List are by fellow celiacs with no better insight into the disease. Please keep this in mind when evaluating their recommendations about procedures or ingredients.

    14. If you decide to remain subscribed to this mailing list, your doing so indicates agreement by you to the all the policies outlined in this Welcome message, including the terms and conditions to be found in the following two paragraphs.

    If you do not agree to the provisions of the two paragraphs immediately above, or with any other policy included in this Welcome message, please unsubscribe from the CELIAC List immediately.

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    D. Attention AOL subscriber

    List mail reflects the address of the poster instead of the List. Please do not establish an allow only or block list. These actions result in your mail being sent to the Listowners as an error.

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    E. Specialized Celiac Lists

    There are some other e-mail Lists on Celiac/Coeliac Disease, Sprue, Dermatitis Herpetiformis, Gluten Intolerance, and/or Wheat-Free living:

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    F. CELIAC LIST ADDRESSES:

    The following e-mail addresses are used in relation with this list:

    1. The list address: CELIAC@LISTSERV.ICORS.ORG

    Messages sent to this address go to all list members. This is called "posting" to the list. The list address should never be used for administrative requests regarding your subscription or questions about the list server, as this would unnecessarily annoy several hundreds of list subscribers.

    You can only post to the list from the account under which you are subscribed. If your post is rejected for no apparent reason, contact one of the listowners listed below.

    2. The LISTSERV(R) address: LISTSERV@LISTSERV.ICORS.ORG

    This is the address to which you sent your subscription request, and it should be used for all requests that can be handled automatically by the LISTERVE(R) program. This includes changing your name or address, unsubscribing, changing your subscription options, retrieving files from the file server, searching the list archives, etc. You will find a list of the most commonly used LISTSERV(R) commands in the next section.

    3. The Listowners' addresses are:

    All Listowners CELIAC-REQUEST@LISTSERV.ICORS.ORG
    Mike Jonesmjones@DIGITAL.NET

    These are the people in charge of keeping the list running. If you have any technical or administrative problem that you cannot solve with LISTERVE(R) commands, contact one of the listowners. This would include problems such as having your postings to the list rejected, or if you think some CELIAC messages don't get through to you. (If you contact multiple list owners with the same message, please denote that fact in your message.)

    For more information about handling list errors and problems, see the description for the "QUERY CELIAC" command in the CMDS file.

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    G. Obtaining a previous messages

    All message posted to the celiac are archived in the logfiles. As explained in the CMDS file, a copy of these logfiles can be obtained for reading.

    A logfile search can also be conducted by e-mail as explained in the CMDS file or an interactive search can be conducted from our WWW page:

    In addition it is possible to use a WWW search engine to obtain messages posted to the Internet regarding celiac disease. Use one of these WWW sites and the keyword Celiac to find messages:

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    H. RSS feed of messages

    All messages posted to the Lists are available through RSS feeds

    The feeds are available at these addresses:

    Celiac
    http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?RSS&L=CELIAC&v=1.0

    Cel-Kids
    http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?RSS&L=CEL-Kids&v=1.0

    CELIAC-DIABETES
    http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?RSS&L=CELIAC-DIABETES&v=1.0

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    Copyright

    Permission is granted to copy this document, at no charge and in its entirety, provided that the copies are not used for commercial advantage, that the source is cited and that the present copyright notice is included in all copies, so that the recipients of such copies are equally bound to abide by the present conditions. Prior written permission is required for any commercial use of this document, in whole or in part, and for any partial reproduction of the contents of this document exceeding 50 lines of up to 80 characters, or equivalent. The title page, table of contents and index, if any, are not considered to be part of the document for the purposes of this copyright notice, and can be freely removed if present.

    The purpose of this copyright is to protect your right to make free copies of this paper for your friends and colleagues, to prevent publishers from using it for commercial advantage, and to prevent ill-meaning people from altering the meaning of the document by changing or removing a few paragraphs.

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    Disclaimer

    This fact sheet has been designed to be a general information resource. However, it is not intended for use in diagnosis, treatment, or any other medical application. Questions should be directed to your personal physician. This information is not warranted and no liability is assumed by the author or any group for the recommendations, information, dietary suggestions, menus, and recipes promulgated. Based upon accepted practices in supplying the source documents, this fact sheet is accurate and complete. Products mentioned or omitted do not constitute endorsement.

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